Tomorrow is D day (or pink motorised wheelchair day!!!).
At 9am tomorrow Amelia is having her brand new $17,000 pink wheelchair delivered to her Special School.
It is so exciting (escpecially her enthusiasm right now) but it is also another part of the journey for Scott and I.
You see, Amelia cannot walk now without us.
It is extremely unsafe.
She is falling out of bed each night.
She cannot toilet on her own or feed herself.
The kindness, quick wit and compassion is still there but she is very sad 50% of each day (and it is usually when we have her.......exhausted).
I think I will start looking into medication for her soon.
I can understand her frustration and sadness because I experience it daily too, but I put 100% into putting on a "happy face" and assisting her every minute she is back with us.
You see, because she is so "thoughtful" of others it would upset her greatly to know how much I struggle watching this happen.......24 hours a day / 7 days a week.
That is where these "blogs" help me release negative energy.
The people around me also have a massive impact on my overall demeanor.
Very difficult to watch someone lose all their "skills".
Anyway , back on track ........
Tomorrow the wheelchair AND Wednesday the car !!!!!!
Cannot wait.
I will have both children at the car conversion place for approximately 6 hours.
(Teachers strike at school for Tom).
Hopefully I can entertain the kids for that long!
On Saturday night we will be having a "Wheelchair Party" to celebrate it's arrival.
What began with just one family attending, is now at about 10 families !!!!
Amelia is excited to proudly "show off " her chair.
Last weekend I attended my second 20 year reunion for high school (yes I went to 2 high schools).
I thought it may be difficult considering I left there with "no friends" (consider an anxious teenage brain, in Target clothes rather than Esprit and Cherrylane!).
I felt alone on many occasions for 2 years.
Once again teenage brain.
Anyway , back on track AGAIN.......
I had an awesome time.
I came home from the BBQ and told Scott everyone was going to the pub.
He said "get in the car. The kids and I will take you. You need time to be YOU".
I am extremely grateful to him, because I had a GREAT time.
Difficult being hungover on Fathers Day BUT still a great time.
In a way I feel like I have "settled" a personal memory.
Probably helps that I am a different person now.
I still complain daily about my weight gain, but I also do not give a shit about "friendship anxiety" now.
So as I go and get ready for dinner I leave you with a conversation I had with Tom today.
TOM: You are the best mum.
ME : Thank you ..... considering I am your only mum ??!!
TOM : Oh yes but I am comparing you to all my friends mum's.
WTF ??!!!
Do not forget the Amelia's Project page on Facebook.
These blogs are only ever posted there.
http://www.facebook.com/groups/ameliasproject/
xxx
Amelia is a beautiful ten year old who has been diagnosed with Ataxia Telangiectasia.
Monday, 3 September 2012
Friday, 31 August 2012
End of another chapter
Today was the end of another chapter in our book about Amelia's journey.
Amelia had her last day at "mainstream" school.
It was her decision.
She felt she was ready to attend special school full time.
Amelia decided to attend a place where she feels she "belongs" rather than a place where she feels she doesn't anymore.
It is neither a criticism on the staff, students or parents.
It is the progress of her disease, ataxia telangiectasia, and choosing to be where she feels most comfortable.
Once again, it was Amelia's decision, not mine.
I do not disagree with her "speaking up" but it was never going to be a decision I would decide for her.
I realised that my week has been full of trepidation about today.
I have been trying to understand the basis of my anxiety.
It was only today that I realised it is another step in the decline of A-T.
Another step closer to ....... well you know.
Amelia has attended this school since 2010 as a mainstream student.
Certain staff members travelled with us on the pathway of diagnosis.
They grieved along with Scott and I.
They mourned the reality of Amelia's decline.
Every single individual handled it differently ....... and still does now.
Today it was obvious who can overcome their own selfishness and who can understand and accept a 9 year old's choice in what is a very difficult life.
Today began with a speech from a beautiful Vice Principal.
I listened with great intent and Amelia smiled like she has not in a long time.
To combine his speech with " Literacy Week" he explained that he had written a poem for someone special who was attending her last day at LPS today.
A is for Amazing
M is for Marvellous
E is for Energetic
L is for Loving
I is for Inspiring
and finally
A is for Awesome.
He explained that Amelia is going to attend another school now.
He also thanked the school community for "embracing" Amelia.
He also told her she will be getting a big kiss and cuddle later !!!!!
In front of over 450 students and at least 30 parents, it was beautiful.
Amelia's smile was priceless.
Tom ran up to me afterwards as a proud brother.
He was not jealous or confused.
Just proud.
"Mr Barnes talked about my sister, my bee-ub (the name he has called Amelia since he was 15 months old). I had the biggest smile on my face mum".
I was grateful that I was taken out for lunch with two very special friends.
It not only took my mind off the momentous (if that is the correct word) occasion but also gave me a chance to be me.
Amelia had flowers professionally delivered to school.
Special teachers gave her presents.
A special mum made her cupcakes to celebrate her farewell.
It was a special occasion in Amelia's life.
A closing chapter in her journey.
A memory of a time and of people that have contributed to Amelia's life, however short that may be.
The children are who I think about the most.
On this journey we reach for the positives and learning.
You have to think that maybe there is some benefit to others in this horrible card we have been dealt.
I hope that the children at her mainstream school have learnt something from Amelia in establishing themselves in their own life.
Happiness, Negativity and Appreciation come to mind immediately.
The understanding and development of these traits is essential in everyday life.
Compassion, empathy and friendship are next on my list.
They will assist in developing a decent human being.
The teachers may be beyond learning but it is evident many have taken away a lesson in having Amelia attend their school.
Or maybe it was already "inbuilt" in some.
One teacher was realeased from hospital yesterday only to attend briefly today "just to say good bye to Amelia".
The gifts and cup cakes she brought will be treasured forever.
People like Phil Barnes, Petulia Dunn, Jayde Wakefield, Tanya and Nicola Pepper will have a special place in "Amelia's Life" forever.
Thank you for assisting me in making her life special.
You all go beyond the duty of "teacher" and actually treat people as human.
Sometimes "rules" and "protocol" need to be broken.
It is rare that a student is diagnosed with a "terminal illness" and I think you have all handled yourselves beautifully.
Finally the wonderful Meredith Hill.
I am so happy that we have become friends.
I do not know what I would have done with out you.
The flowers you had professionally delivered to Amelia today were beautiful.
And Katý.
I do not know your surname.
I just know you have a child in Tom's class.
Thank you for being such a kind person to make very special cupcakes for not only Amelia's class and all the teachers...... but also for Tom's class.
Please support Katy's new business by visiting her website
www.katyskakes.com.au
The end of this chapter brings great sadness and appreciation for people who are naturally beautiful people.
Always look for the positives.
xxx
Amelia had her last day at "mainstream" school.
It was her decision.
She felt she was ready to attend special school full time.
Amelia decided to attend a place where she feels she "belongs" rather than a place where she feels she doesn't anymore.
It is neither a criticism on the staff, students or parents.
It is the progress of her disease, ataxia telangiectasia, and choosing to be where she feels most comfortable.
Once again, it was Amelia's decision, not mine.
I do not disagree with her "speaking up" but it was never going to be a decision I would decide for her.
I realised that my week has been full of trepidation about today.
I have been trying to understand the basis of my anxiety.
It was only today that I realised it is another step in the decline of A-T.
Another step closer to ....... well you know.
Amelia has attended this school since 2010 as a mainstream student.
Certain staff members travelled with us on the pathway of diagnosis.
They grieved along with Scott and I.
They mourned the reality of Amelia's decline.
Every single individual handled it differently ....... and still does now.
Today it was obvious who can overcome their own selfishness and who can understand and accept a 9 year old's choice in what is a very difficult life.
Today began with a speech from a beautiful Vice Principal.
I listened with great intent and Amelia smiled like she has not in a long time.
To combine his speech with " Literacy Week" he explained that he had written a poem for someone special who was attending her last day at LPS today.
A is for Amazing
M is for Marvellous
E is for Energetic
L is for Loving
I is for Inspiring
and finally
A is for Awesome.
He explained that Amelia is going to attend another school now.
He also thanked the school community for "embracing" Amelia.
He also told her she will be getting a big kiss and cuddle later !!!!!
In front of over 450 students and at least 30 parents, it was beautiful.
Amelia's smile was priceless.
Tom ran up to me afterwards as a proud brother.
He was not jealous or confused.
Just proud.
"Mr Barnes talked about my sister, my bee-ub (the name he has called Amelia since he was 15 months old). I had the biggest smile on my face mum".
I was grateful that I was taken out for lunch with two very special friends.
It not only took my mind off the momentous (if that is the correct word) occasion but also gave me a chance to be me.
Amelia had flowers professionally delivered to school.
Special teachers gave her presents.
A special mum made her cupcakes to celebrate her farewell.
It was a special occasion in Amelia's life.
A closing chapter in her journey.
A memory of a time and of people that have contributed to Amelia's life, however short that may be.
The children are who I think about the most.
On this journey we reach for the positives and learning.
You have to think that maybe there is some benefit to others in this horrible card we have been dealt.
I hope that the children at her mainstream school have learnt something from Amelia in establishing themselves in their own life.
Happiness, Negativity and Appreciation come to mind immediately.
The understanding and development of these traits is essential in everyday life.
Compassion, empathy and friendship are next on my list.
They will assist in developing a decent human being.
The teachers may be beyond learning but it is evident many have taken away a lesson in having Amelia attend their school.
Or maybe it was already "inbuilt" in some.
One teacher was realeased from hospital yesterday only to attend briefly today "just to say good bye to Amelia".
The gifts and cup cakes she brought will be treasured forever.
People like Phil Barnes, Petulia Dunn, Jayde Wakefield, Tanya and Nicola Pepper will have a special place in "Amelia's Life" forever.
Thank you for assisting me in making her life special.
You all go beyond the duty of "teacher" and actually treat people as human.
Sometimes "rules" and "protocol" need to be broken.
It is rare that a student is diagnosed with a "terminal illness" and I think you have all handled yourselves beautifully.
Finally the wonderful Meredith Hill.
I am so happy that we have become friends.
I do not know what I would have done with out you.
The flowers you had professionally delivered to Amelia today were beautiful.
And Katý.
I do not know your surname.
I just know you have a child in Tom's class.
Thank you for being such a kind person to make very special cupcakes for not only Amelia's class and all the teachers...... but also for Tom's class.
Please support Katy's new business by visiting her website
www.katyskakes.com.au
The end of this chapter brings great sadness and appreciation for people who are naturally beautiful people.
Always look for the positives.
xxx
Wednesday, 29 August 2012
Thank you to everyone for their compassion and messages after my last entry.
Amelia (and all of us) are doing really well and have happily supported her on the decision she made.
Tom was initially upset because he will no longer see Amelia at school, but he understands why she wants to do it.
I wanted to come here to tell you all about something that we are all very excited about.
Next Tuesday Amelia is going to finally be given her motorised PINK wheelchair.
It will be hers to keep forever !!!!
She is beside herself excited (and obviously so am I !!).
Next week the converted Kia Carnival will also be ready to pick up ...on Wednesday.
So Amelia and I will take a "wheelchair taxi" to the conversion workshop to do the final fittings.
Finally we will get it all !!!!
This winter and my back have been making the manual wheelchair a difficult exercise, so it is going to be exciting for everyone.
Sound obsession (in Frankston) have also installed a DVD player (with 300 inbuilt games), in the car, for us as well.
We may just want to live IN the car !!
Finally, the communication device.
As Amelia's speech becomes more difficult to understand and she tires easily, this device from Dynavox will be extremely helpful.
As well as letting us know what she wants to say, it also has an inbuilt computer, wifi and bluetooth. It will be connected to her wheelchair.
The joystick "driving control" can switch to be a mouse for the communication/computer device.
We were going to be $6400 out of pocket once the government made their contribution.
Thanks to the beautiful people at Anglicare in Rosebud we now have nothing to pay.
Anglicare are paying the entire gap of $6400.
AWESOME, AWESOME, AWESOME !!!!!!
By Amelia's enthusiasm already, I know this is going to lift everyones spirits up.
xxx
Amelia (and all of us) are doing really well and have happily supported her on the decision she made.
Tom was initially upset because he will no longer see Amelia at school, but he understands why she wants to do it.
I wanted to come here to tell you all about something that we are all very excited about.
Next Tuesday Amelia is going to finally be given her motorised PINK wheelchair.
It will be hers to keep forever !!!!
She is beside herself excited (and obviously so am I !!).
Next week the converted Kia Carnival will also be ready to pick up ...on Wednesday.
So Amelia and I will take a "wheelchair taxi" to the conversion workshop to do the final fittings.
Finally we will get it all !!!!
This winter and my back have been making the manual wheelchair a difficult exercise, so it is going to be exciting for everyone.
Sound obsession (in Frankston) have also installed a DVD player (with 300 inbuilt games), in the car, for us as well.
We may just want to live IN the car !!
Finally, the communication device.
As Amelia's speech becomes more difficult to understand and she tires easily, this device from Dynavox will be extremely helpful.
As well as letting us know what she wants to say, it also has an inbuilt computer, wifi and bluetooth. It will be connected to her wheelchair.
The joystick "driving control" can switch to be a mouse for the communication/computer device.
We were going to be $6400 out of pocket once the government made their contribution.
Thanks to the beautiful people at Anglicare in Rosebud we now have nothing to pay.
Anglicare are paying the entire gap of $6400.
AWESOME, AWESOME, AWESOME !!!!!!
By Amelia's enthusiasm already, I know this is going to lift everyones spirits up.
xxx
Friday, 24 August 2012
Emotional Morning
Recently I thought that the increase in my medication was not allowing me to cry..... at all.
Today I realised that is not the case.....................
Amelia sat sadly on the couch waiting for me to take Tom and her to "mainstream" school today.
Friday is the only day she attends her grade 3 class there.
I sat down next to her and casually asked "What is wrong?".
After some TLC, she looked at me sadly and said "I want to go to (special school) fulltime".
"Ok. Decision is made then. If that is what you really want, I will organise it today" I answered.
Then I asked "Why?".
"Because all of the kids there are like me" she said.
Insert first emotional moment of the day.
We rang Scott and spoke to him about it.
I loved how his response to Amelia was enthusiastic and supportive.
When we arrived at school, I told her teacher and aide that "Amelia will be attending (special school) full time next term. We will finish the last few weeks of this term off here".
Then I went and told the Principal.
Thankfully all the staff were understanding and supportive of the decision.
After reading with Tom's class, I had to go and ask Amelia's teacher if I could bring in Scamp (one of our dogs) for her show and tell.
It was something I had forgotten earlier.
As I entered Amelia's classroom I chose to go and tell her that I needed to organise bringing Scamp in.
As I stood next to her wheelchair and waited for her eyes to look at me, I saw great sadness.
She looked at me, reached out her arms for a cuddle and started crying.
After my natural reaction of "What is wrong?", she looked at me and said.....
"I do not belong here".
Suddenly the world stopped spinning.
Staring at her with tears building and my mind going into overdrive, I decided to do what any mother would do.
I was going to take my little girl home.
As I told surrounding staff members about my little girls "thoughts", they were visibly fighting emotions too.
As I pushed Amelia past 3P coming back into class, many of the class were worried and verbally expressing concern that "Amelia is crying".
As we climbed into the car, my own tears started flowing.
"Why are you crying Mum?" Amelia asked.
I looked at her through my streaming tears and said
"I never want you to feel like you do not belong. Just because you have a wheelchair and A-T does not mean that you are less a person. Thank you for telling me how you feel so we can fix it for you."
xxx
Today I realised that is not the case.....................
Amelia sat sadly on the couch waiting for me to take Tom and her to "mainstream" school today.
Friday is the only day she attends her grade 3 class there.
I sat down next to her and casually asked "What is wrong?".
After some TLC, she looked at me sadly and said "I want to go to (special school) fulltime".
"Ok. Decision is made then. If that is what you really want, I will organise it today" I answered.
Then I asked "Why?".
"Because all of the kids there are like me" she said.
Insert first emotional moment of the day.
We rang Scott and spoke to him about it.
I loved how his response to Amelia was enthusiastic and supportive.
When we arrived at school, I told her teacher and aide that "Amelia will be attending (special school) full time next term. We will finish the last few weeks of this term off here".
Then I went and told the Principal.
Thankfully all the staff were understanding and supportive of the decision.
After reading with Tom's class, I had to go and ask Amelia's teacher if I could bring in Scamp (one of our dogs) for her show and tell.
It was something I had forgotten earlier.
As I entered Amelia's classroom I chose to go and tell her that I needed to organise bringing Scamp in.
As I stood next to her wheelchair and waited for her eyes to look at me, I saw great sadness.
She looked at me, reached out her arms for a cuddle and started crying.
After my natural reaction of "What is wrong?", she looked at me and said.....
"I do not belong here".
Suddenly the world stopped spinning.
Staring at her with tears building and my mind going into overdrive, I decided to do what any mother would do.
I was going to take my little girl home.
As I told surrounding staff members about my little girls "thoughts", they were visibly fighting emotions too.
As I pushed Amelia past 3P coming back into class, many of the class were worried and verbally expressing concern that "Amelia is crying".
As we climbed into the car, my own tears started flowing.
"Why are you crying Mum?" Amelia asked.
I looked at her through my streaming tears and said
"I never want you to feel like you do not belong. Just because you have a wheelchair and A-T does not mean that you are less a person. Thank you for telling me how you feel so we can fix it for you."
xxx
Wednesday, 22 August 2012
Time and changes
It has been a long time between posts.
While we wait patiently (unfortunately Amelia does not know what this word means) for the electric wheelchair and car to be converted we have experienced what can only be described as another decline.
Amelia can not "safely" walk now by herself.
We have to feed her 70% of the time.
We can no longer leave her alone while eating due to choking.
This morning while I was having my shower I heard lots of noises in our bedroom.
As the doors slowly opened and Amelia crawled in, I realised she was unable to walk at all.
She laid on the floor smiling and talking to me.
Recently I said how well she was doing........well that is not the case anymore.
Rollercoaster.
Tom approached her aide at mainstream last Friday and requested Amelia be taken to the canteen at lunchtime.
He wanted to buy her a hot chocolate with his "tooth fairy"money.
When apparently a child called her names for accidently spilling it, Tom reacted immediately in defending his sister.
I can slowly see the beautiful human being he is becoming.
Finally ...... life.
I encountered a "hurdle" recently.
It involved friends, what is appropriate behaviour and a very strong belief of mine.
I had tried many ways to handle this situation.
I made a firm decision (with the support of others) that affected many around me.
I am disappointed and ashamed of the ramifications of this decision.
My own behaviour and that of others is something to analyse and learn by.
I have lost friends,
how many ?
I do not know yet.
It was their choice to "walk away" so now it is my choice to "move on".
xxx
While we wait patiently (unfortunately Amelia does not know what this word means) for the electric wheelchair and car to be converted we have experienced what can only be described as another decline.
Amelia can not "safely" walk now by herself.
We have to feed her 70% of the time.
We can no longer leave her alone while eating due to choking.
This morning while I was having my shower I heard lots of noises in our bedroom.
As the doors slowly opened and Amelia crawled in, I realised she was unable to walk at all.
She laid on the floor smiling and talking to me.
Recently I said how well she was doing........well that is not the case anymore.
Rollercoaster.
Tom approached her aide at mainstream last Friday and requested Amelia be taken to the canteen at lunchtime.
He wanted to buy her a hot chocolate with his "tooth fairy"money.
When apparently a child called her names for accidently spilling it, Tom reacted immediately in defending his sister.
I can slowly see the beautiful human being he is becoming.
Finally ...... life.
I encountered a "hurdle" recently.
It involved friends, what is appropriate behaviour and a very strong belief of mine.
I had tried many ways to handle this situation.
I made a firm decision (with the support of others) that affected many around me.
I am disappointed and ashamed of the ramifications of this decision.
My own behaviour and that of others is something to analyse and learn by.
I have lost friends,
how many ?
I do not know yet.
It was their choice to "walk away" so now it is my choice to "move on".
xxx
Wednesday, 8 August 2012
Amelia's Project Night PART 2
I would like to begin tonight with a question.......
Why under such stress does Scott lose a massive amount of weight and I put it on ???!!!
So many people said they did not recognise him on Saturday night because of the amount of weight he has lost.
Is there any board of directors that I can possibly file a complaint with and have this matter addressed immediately ???!!!
In all seriousness, thank you to all that attended, donated and helped.
Some comments I have heard over the last few days were.....
"It was even better than last year"
"The atmosphere was so relaxed"
"I loved everything about it"
"Is Darren single?"...... (don't worry Di, I said no!!)
After the final count of money it was discovered we had raised $19,790.45.
Unbelievable.
The Kia (new car) arrived at the local Mitsubishi dealership last Tuesday from overseas.
It has now been transported to the wheelchair conversion company in the city.
When they have finished with it, Amelia will be able to drive her electric wheelchair straight into the back of it.
It will have a "docking station"and connecting bolt under her wheelchair so that we do not have to strap/seatbelt the chair in every time.
The car will be ready in approximately 4 weeks.
The electric wheelchair has been ordered BUT because the little girl wants "hot pink" it is coming from America.
Estimated arrival time ?
4 weeks.
So I guess everything will be very exciting around here in ....... approx 4 weeks !!!!
There are waaaaay too many people to thank for Saturday night so I will name just a few....
Darren our MC.
Belinda a major organiser of all donations, all 3 DVD's shown on the night, and organisation for smooth running on the night.
Michelle for organising tables, tickets and the RSL.
Peter for donations and the RSL booking.
There are many other people that helped in many other ways.
I will mention them in Part 3 !!!!
I strongly suggest that everyone have a look at the "Friends and Family" dedication DVD on Amelia's Project page on Facebook.
There are photo's of so many of you that have supported us...........
xxx
Why under such stress does Scott lose a massive amount of weight and I put it on ???!!!
So many people said they did not recognise him on Saturday night because of the amount of weight he has lost.
Is there any board of directors that I can possibly file a complaint with and have this matter addressed immediately ???!!!
In all seriousness, thank you to all that attended, donated and helped.
Some comments I have heard over the last few days were.....
"It was even better than last year"
"The atmosphere was so relaxed"
"I loved everything about it"
"Is Darren single?"...... (don't worry Di, I said no!!)
After the final count of money it was discovered we had raised $19,790.45.
Unbelievable.
The Kia (new car) arrived at the local Mitsubishi dealership last Tuesday from overseas.
It has now been transported to the wheelchair conversion company in the city.
When they have finished with it, Amelia will be able to drive her electric wheelchair straight into the back of it.
It will have a "docking station"and connecting bolt under her wheelchair so that we do not have to strap/seatbelt the chair in every time.
The car will be ready in approximately 4 weeks.
The electric wheelchair has been ordered BUT because the little girl wants "hot pink" it is coming from America.
Estimated arrival time ?
4 weeks.
So I guess everything will be very exciting around here in ....... approx 4 weeks !!!!
There are waaaaay too many people to thank for Saturday night so I will name just a few....
Darren our MC.
Belinda a major organiser of all donations, all 3 DVD's shown on the night, and organisation for smooth running on the night.
Michelle for organising tables, tickets and the RSL.
Peter for donations and the RSL booking.
There are many other people that helped in many other ways.
I will mention them in Part 3 !!!!
I strongly suggest that everyone have a look at the "Friends and Family" dedication DVD on Amelia's Project page on Facebook.
There are photo's of so many of you that have supported us...........
xxx
Sunday, 5 August 2012
Amelia's Project Night PART 1
WOW.
Amelia's angels organised another amazing night last night.
They also all worked to create a smooth running and fun night for all.
We do not know the money amount yet but will be able to announce it by Thursday.
As many of you know though, Scott and I appreciate the support and love in the room MORE than any amount raised.
It is going to take me a little while to recover from the last week so I am going to go to bed early tonight.
I thought I would cut and paste my speech on here for those that may be interested.
I will speech more about the night during the week.
Goodnight.
xxx
MY SPEECH
Saturday 4th August 2012
You have all chosen to attend a night for OUR daughter.
You have paid $60 to come and assist her not only have an amazing life but also to assist us in purchasing the necessary equipment to make her life easier.
You will also experience a night to remember because the same way this night has been planned is the same way Amelia’s Project began.
It began with friendship, love and kindness.
But the true meaning of an amazing life is happiness and fun.
While we endeavour to ensure Amelia’s daily life is full of happiness we also realise that it should be the same for every individual.
Please relax and enjoy yourself tonight and drink WAAAAY too much.
Last year, many of you came here to help us take her to Disneyland.
You have just witnessed some pictures of us at the “most magical and wonderful place on earth”.
I can assure you all that it did live up to its reputation.
Some people were worried that we may encounter disappointment.
I can assure you, that it was never the case.
(even when Tom vomited all over Scott and I on the plane)
Because of everyone in this room last year we were able to experience the most amazing holiday as a family.
To create memories that WILL last a lifetime.
The smile and happiness projected from not only Amelia, but all of us, will stay in my memories forever.
After our beautiful night last year, I was approached by someone who attended.
I had attended High School with her and had not kept in contact since.
She messaged me on Facebook and said…….“My husband walked away from your night and immediately began planning to remodel your 2 bathrooms. He is a builder. He now has a team that would like to donate their labour to creating 2 bathrooms suitable for a hoist and a wheelchair”.
So while we were in America they developed the most amazing bathrooms…….
The rest of our house looks incredibly dated now !!
To Jenny Taylor and Mark O’Dea, we will always be grateful for what you did for us.
The words “Thank you” will never be enough.
Amelia’s Project began out of a group of friends, both past and present AND I can honestly say now……future friends.
It was a group created from friendship ….. kindness …… and support.
It was a group of strangers ….. but all known to me ….. that wanted to join a group to assist not only the money pouring in but also the little girl in the middle of it all.
Amelia’s Project is about Amelia.
Full stop.
Amelia WILL have an amazing life , while also getting all the necessary equipment she may need……..
But in the end there will be no regrets.
Amelia’s Project is about a life with NO REGRETS.
If …. and when we say goodbye, I want to be proud of what we were able to offer her…….. as a united group, not as just a family.
Every single person in this room ……… should….. and would be proud of their contribution.
Amelia’s Project Committee and it’s helpers can never receive enough thank you from our family.
In the next speech of this evening you will hear about each individual BUT I know the person talking will not thank herself.
Belinda Plunket has planned this whole night with Michelle Clark. Belinda is our rock, event planner, time keeper and overall organiser.
Her love for Amelia is evident and my love for her is indescribable.
I do not know what to say except thank you from the bottom of our hearts.
You are one in a million and I am so lucky to have you as a close friend.
May I also take this chance to thank my dad, my mum, Scott’s dad, Scott’s sister Jane and my brother Stuart.
Your support has been beyond describable and we thank you for standing with us all through this.
Live in the moment.
Appreciate every minute of every day.
Scott and I stopped looking into the future 19 months ago and now accept we will be elderly before we pay off our mortgage.
Do we give a shit?
NO.
We have Amelia NOW and we are going to enjoy every single second of that time.
Much debate happened recently over a DVD that my cousin and I were creating.
It showed Amelia at 3 and 4 years of age compared to now.
It was not only incredibly upsetting to collate but also to watch the final copy.
I…… personally, chose not to show it tonight.
Not only was it humiliating to Amelia, but it would also be incredibly upsetting to many in this room tonight.
Amelia used to run ahead of me into school, jump on the bed and sing and dance all day.
She was a “normal” child .
ow she needs someone to WALK with her constantly, someone to help get food into her mouth and needs assistance toileting and showering.
The patience needed to communicate with Amelia is time consuming and also very upsetting when you cannot understand what she is saying.
I was filming all of this to show you.
Filming a 9 year old child struggling to do every day tasks.
She did not like it and neither did I.
In 2 years the decline has been massive.
And it only gets worse from now on.
Ataxia Telangiectasia or A-T is a very nasty disease.
You cannot CATCH it.
It is genetic from your parents.’
It begins showing itself at 2 years of age.
It is degenerative …… it gets worse.
As your brain cells die , as they do in every human, they are not replaced as they are for us.
Slowly all motor skills are taken away…, as is reading,….. writing, and speech.
Children with A-T die from either cancer (where there is a 1000x higher risk of getting than any other human), respiratory infection or choking.
24 hours a day we live with this BUT I have chosen not to show you any of this tonight.
Tonight is about going out and contributing to everyone in this rooms AMAZING LIFE.
(((((When that special message is uploaded to You Tube I will put the link on here)))))
xxx
Amelia's angels organised another amazing night last night.
They also all worked to create a smooth running and fun night for all.
We do not know the money amount yet but will be able to announce it by Thursday.
As many of you know though, Scott and I appreciate the support and love in the room MORE than any amount raised.
It is going to take me a little while to recover from the last week so I am going to go to bed early tonight.
I thought I would cut and paste my speech on here for those that may be interested.
I will speech more about the night during the week.
Goodnight.
xxx
MY SPEECH
Saturday 4th August 2012
It is with
much love in my heart that I welcome every single person in this room tonight.
My name is
Amanda and I am truly honoured to be Amelia and Tom’s mother ….. and Scott’s
wife.You have all chosen to attend a night for OUR daughter.
You have paid $60 to come and assist her not only have an amazing life but also to assist us in purchasing the necessary equipment to make her life easier.
You will also experience a night to remember because the same way this night has been planned is the same way Amelia’s Project began.
It began with friendship, love and kindness.
But the true meaning of an amazing life is happiness and fun.
While we endeavour to ensure Amelia’s daily life is full of happiness we also realise that it should be the same for every individual.
Please relax and enjoy yourself tonight and drink WAAAAY too much.
Last year, many of you came here to help us take her to Disneyland.
You have just witnessed some pictures of us at the “most magical and wonderful place on earth”.
I can assure you all that it did live up to its reputation.
Some people were worried that we may encounter disappointment.
I can assure you, that it was never the case.
(even when Tom vomited all over Scott and I on the plane)
Because of everyone in this room last year we were able to experience the most amazing holiday as a family.
To create memories that WILL last a lifetime.
The smile and happiness projected from not only Amelia, but all of us, will stay in my memories forever.
After our beautiful night last year, I was approached by someone who attended.
I had attended High School with her and had not kept in contact since.
She messaged me on Facebook and said…….“My husband walked away from your night and immediately began planning to remodel your 2 bathrooms. He is a builder. He now has a team that would like to donate their labour to creating 2 bathrooms suitable for a hoist and a wheelchair”.
So while we were in America they developed the most amazing bathrooms…….
The rest of our house looks incredibly dated now !!
To Jenny Taylor and Mark O’Dea, we will always be grateful for what you did for us.
The words “Thank you” will never be enough.
Amelia’s Project began out of a group of friends, both past and present AND I can honestly say now……future friends.
It was a group created from friendship ….. kindness …… and support.
It was a group of strangers ….. but all known to me ….. that wanted to join a group to assist not only the money pouring in but also the little girl in the middle of it all.
Amelia’s Project is about Amelia.
Full stop.
Amelia WILL have an amazing life , while also getting all the necessary equipment she may need……..
But in the end there will be no regrets.
Amelia’s Project is about a life with NO REGRETS.
If …. and when we say goodbye, I want to be proud of what we were able to offer her…….. as a united group, not as just a family.
Every single person in this room ……… should….. and would be proud of their contribution.
Amelia’s Project Committee and it’s helpers can never receive enough thank you from our family.
In the next speech of this evening you will hear about each individual BUT I know the person talking will not thank herself.
Belinda Plunket has planned this whole night with Michelle Clark. Belinda is our rock, event planner, time keeper and overall organiser.
Her love for Amelia is evident and my love for her is indescribable.
I do not know what to say except thank you from the bottom of our hearts.
You are one in a million and I am so lucky to have you as a close friend.
May I also take this chance to thank my dad, my mum, Scott’s dad, Scott’s sister Jane and my brother Stuart.
Your support has been beyond describable and we thank you for standing with us all through this.
And finally
I would like to address …… YOU.
Your own
person sitting there in your chair.Live in the moment.
Appreciate every minute of every day.
Scott and I stopped looking into the future 19 months ago and now accept we will be elderly before we pay off our mortgage.
Do we give a shit?
NO.
We have Amelia NOW and we are going to enjoy every single second of that time.
Much debate happened recently over a DVD that my cousin and I were creating.
It showed Amelia at 3 and 4 years of age compared to now.
It was not only incredibly upsetting to collate but also to watch the final copy.
I…… personally, chose not to show it tonight.
Not only was it humiliating to Amelia, but it would also be incredibly upsetting to many in this room tonight.
Amelia used to run ahead of me into school, jump on the bed and sing and dance all day.
She was a “normal” child .
ow she needs someone to WALK with her constantly, someone to help get food into her mouth and needs assistance toileting and showering.
The patience needed to communicate with Amelia is time consuming and also very upsetting when you cannot understand what she is saying.
I was filming all of this to show you.
Filming a 9 year old child struggling to do every day tasks.
She did not like it and neither did I.
In 2 years the decline has been massive.
And it only gets worse from now on.
Ataxia Telangiectasia or A-T is a very nasty disease.
You cannot CATCH it.
It is genetic from your parents.’
It begins showing itself at 2 years of age.
It is degenerative …… it gets worse.
As your brain cells die , as they do in every human, they are not replaced as they are for us.
Slowly all motor skills are taken away…, as is reading,….. writing, and speech.
Children with A-T die from either cancer (where there is a 1000x higher risk of getting than any other human), respiratory infection or choking.
24 hours a day we live with this BUT I have chosen not to show you any of this tonight.
Tonight is about going out and contributing to everyone in this rooms AMAZING LIFE.
Please watch
this very special message and remember it when you are struggling to get
through a day………..
(((((When that special message is uploaded to You Tube I will put the link on here)))))
xxx
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